Litterae or Poetry as Inspiration

So tonight in our Living Richly with Chronic Illness Group we of course had our normal check in time and then we ventured into poetry. I read some poems written by a child who suffered from Muscular Dystrophy and although they were simple there was such depth and perception which came across for such a young person.  Keeping it simple this child had the ability to speak even to adults about how to not only live with a pesky chronic illness but to keep his mind uplifted and enlightened even through the interminable side effects of disease. Then we  moved on to a well known poem written by William Ernest Henley in 1875, Invictus.  Upon doing a little research this week I realized that the author had struggled through his own life with chronic illness and even suffered the loss of his leg in his teenage years, yet somehow managed to live a full and complete life effecting others through his written words for years to come.  Invictus is oft quoted, used to inspire and give hope, spur one another along to victory in the face of insurmountable odds and offer up hope to our little group on Wednesday evenings.  I will end this post with the Poems words and hope that they bring you some hope, courage and motivation. 

INVICTUS

Out of the night that covers me

Black as the Pit from pole to pole

I thank whatever Gods may be

For my unconquerable soul

In the fell clutch of circumstance

I have not winced or cried aloud

Under the bludgeonings of chance

My head is bloodies but not unbowed

Beyond this place of wrath and tears

Looms but the horror of the shade

And yet the menace of years

Finds, and shall find me unafraid

It matters not how strait the gate

How charged with punishments the scroll

I am the master of my fate

I am the captain of my soul

William Ernest Henley

Desire for Discussion

So recently I found this series on Netflix called Three Rivers.  I implore you to watch it so you can get a better understanding of the whole process that goes along with Transplants.  Of course it is a bit sensationalized for TV Drama sake but there are some really great topics addressed and some pretty tough subjects challenged.  So episode 7 really got me to thinking and I am hoping some of you will join in a discussion with me.  The character Jeff has ALS Lou Gherric's Disease and his quality of life has been severely hindered so he decides he wants to come off the ventilator  and donate all of his organs.  Should this be allowed, how ethical is it and who should be the judge of if this is right or wrong.  This was Jeff's choice and it made sense to him.  If death always wins, it's only a matter of when and how, quality of life is vastly important.  Some of us want to have the best death that we can possibly have and we want to be at peace.  Jeff's death would serve the greater good, 7 lives would be saved by his death.   There was another young man who needed a second heart transplant and although his parents wanted him to continue to fight he wanted to let nature take it's course.  He ended up getting a second transplant but his body immediately rejected the new heart and he died in surgery. Another young man named Kual from Africa keeps getting denied and then moves a step closer then two steps back and then back to square one and just like me he has no insurance.  His temperament is amazingly positive throughout but his story always makes me cry.  So I am asking you to share your thoughts and encourage you to watch the series and join in a dialogue with me about some of these deep theological issues.  Have a great week and see many of you on Wednesday!  

Ad Dolor or in English a Return to Pain

Before you get too worried though this is a good return to pain if there is such a thing.  Day one of returning to pain meant heading up to the YMCA with Kris and Kevin for an awesome but painful workout.  15 minutes on the elliptical and 5 minutes was all I could handle on the stair climber and then 20 minutes on the treadmill just mindlessly putting one foot in front of the other.  Quick break a Glucerna shake to moderate the blood sugars and then ten laps in the pool, ten minutes in the hot tub and five minutes in the sauna.  Wow! I am truly exhausted and just think we get to do it again tomorrow and the next day and the next and you get the point.  The second hospital stay in less than six months has most definitely given me a scare and a desire to kick it into high gear so hear we go again.  At least I didn't gain back all the weight but now I am back up over 300 pounds once again and fighting for my right to be eligible for the transplant list.  A friend recently gave me a scripture which has truly been inspiring me and I want to share it.  II Cor 4:8-10,16 " We are hard pressed on every side, but not crushed, perplexed, but not in despair; persecuted, but not destroyed.  We always carry around our body the death of Jesus, so that the life of Jesus may also be revealed in our body...therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." As a chronically ill person I am constantly reminded that my physical body is weak and wasting but that if I keep up the faith and have good courage my inward spirit can still soar like an eagle and I am so grateful for that.  We are all somehow hard pressed, perplexed, persecuted and can feel crushed by grief, loss and despair but if we choose not to ruminate in that too long but as quickly as possible find other avenues for our frustrations then we can live a healthy and full life, rich with faith and strength.  Good day to you all and hope to chat again soon...:)

first Official Update in 2012

So a friend recently sent me a list of questions and I thought my response would do just nicely for my first official update in the year 2012.  I hope it serves it's purpose well in keeping those who wish to remain informed up to date in this whole process and I pray today's post finds you all healthy and well...

Ok so here goes for trying to answer some more of your specific questions.  I have been to the nearest transplant center in Seattle Washington but have been told that I was not quite sick enough and that to even be considered I would have to lose a significant amount of weight to prove to a transplant board that I was a healthy, worthy candidate (kinda like an alcoholic being told to stop drinking)...Also because of the massive costs associated with a transplant minimum of $500 Thousand, not to mention the estimated $300 a month for the rest of my life for anti-rejection medication, the state who I currently have medical through as an indigent has very strict parameters for how a poor person goes about getting on the actual transplant list.  There is only one list and it is a national list presided over by an organization known as UNOS - you should consider going to their website and checking out the info for yourself...I am sorry if I mislead you in our conversations but there is something known as a living liver donation which is where a small part of a healthy person's liver is taken off and then transplanted into the patient with the unhealthy liver.  It is truly amazing but is not covered under state medical and isn't currently done in the state of Washington.  There are only five transplant hospitals in the US currently doing them and I believe Oregon and California are the closest to us here in Washington.  Regarding my actual diagnosis and understanding of it, the type of cirrhosis which I have is NAFDL which is 3/4 of the way to a completely de-compensated liver verses a well compensated one.  A healthy person progresses from well compensated, to fatty liver to NASH (Non-Alcoholic Stetto Hepatitis) to NAFDL and finally to end stage de-compensated liver disease (death or transplant) I am in this third stage and to my understanding there is no recovery only progression but I can be at this stage for some time and then it usually progresses rather rapidly into final stage giving one 6-9 months to live if the patient does not receive a transplant. 

I am not entirely opposed to moving but am trying not to put my God into a box and have some faith that he can heal me and help me to get a transplant right here because he is that miraculous and amazing.  Once you are placed onto the transplant list it is all about regions and your ability to get to the nearest transplant center in enough time to make the transplanted liver viable and healthy.  That is why I would currently be listed at the Seattle transplant center because there is a small window of opportunity once a liver becomes available.  You can't necessarily buy your way onto the transplant list but if you can pay for the surgery and all of the required medications afterwards, this is taken into account (and this I cannot do, obviously), then there are things like blood type, size, age, stage of failure your liver is in and even mental health is taken into account etc...all this is taken into account when being considered for whether you will be put on the list or not, so currently I am not on the list.  I have lost 37 lbs since beginning this journey but I was told at least 80 or more would be best so I am continually working towards that.  As you can guess this is difficult due to fatigue, the onset of Diabetes, osteoarthritis, and all the other daily symptoms I am experiencing but I continue to attempt weight loss. 

I am always open to discussion regarding this entire process and to the Will of God. I do once again thank you for your heartfelt inquiry and look forward to other conversations with you in the future...in the meantime I continue to try to bring God Glory in all I do and say...that is my little part I can play in the larger picture...thx and God Bless

 

"Those who succeed are unwilling to quit.

They want it more than those who don't."

Adam Bornstein

                     Lori L

Affectus Intelligence-Emotional Intelligence

More thoughts from my Psychology in Leadership class...According to the general populace of those in the realm of psychology the premise of emotional intelligence or EQ is one’s ability to distinguish, manage and assess emotions. The key point of this paper was for me to describe my understanding of EQ, as well as how it applied to my life personally.

                When I was younger I felt that emotions were pretty much useless and did little to help me in my life, so recognizing them in myself or others was a waste of time.  This as you can imagine had an impact on the types of jobs or careers which I chose to pursue.  I believe I was blessed with what my mother liked to call “people skills” and just like my father, I could sell ice to an Eskimo.  As for working in or on a team I was rarely comfortable unless I was leading it. So the hospitality industry allowed me to serve others and employ my entrepreneurial skills often.  I opened and managed several small businesses as well as working for some of the larger corporations like the Marriott or Cracker Barrel.  The banking industry was a fun little side trip into the sales industry which was unexpected but not entirely unpleasant.  I found that the workaholic side of me could easily drown in the corporate rat race and for my moral sanity chose not to stay engaged in the corporate world for too long.  The constant changing atmosphere of the hospitality industry allowed me to help others without getting too emotionally invested in my clients or myself.  Pleasantries and social graces were all that was really required along with a modicum of etiquette.  Life, fate and/or God however have a way of pushing us outside of our comfort zones and upon reaching Washington I realized that I would no longer be able to pursue a career in Hospitality.  A severely broken right hand with massive nerve damage, my new single parent status and shortly after a diagnosis of chronic liver disease forced me to rethink my career path.  My value had always been in my physical service to others or so I thought.  Many friends close to me encouraged me to pursue avenues in counseling or teaching but I honestly did not feel equipped emotionally to handle such careers.  My life experiences should have made me empathetic; instead they had made me hard and unforgiving.  I had no patience for what I viewed as whining or cowering and the idea that one should open themselves or others up to a cesspool of emotions was unthinkable. A complete waste of time.  However the more my body began to fail the more I began to have time to write and think about things which I had never before even recognized as useful. I began to write in a journal, read philosophical books, wrestle with God and even allow myself to be angry at the injustice of not only my life but others.  I am not professing to be all knowledgeable in these topics but amendable to the idea that emotions can be healthy and helpful in my own life and others.  This for me is a practical definition of beginning to understand the importance of EQ.

                Another key in EQ is one’s ability to assess emotional intelligence not only in yourself but those around you.  When you are in constant denial of the importance of emotions to begin with it is hard not to take everything another says to you in a personal fashion.  Let me try to explain.  Previously when I would receive criticism, constructive or otherwise I would automatically put up defensive walls and thus was unable to learn from the experience.  I just knew that the only reason the person was criticizing me was that they were either jealous of my talent, or that for some strange reason I wasn’t good enough.  Extreme thinking was all I knew.  There was never any middle ground.  You were either for me or against me and I had little to no time for those who I deemed were against me.  I would eliminate you from my life if possible and if not than I would quit and run away to another job or person better suited to me.  It was easier in my selfish opinion to scrap an entire project than to war with some overly emotional co-worker or boss.  I like to think I have grown in this area due to learning things like assertive communication and healthy boundaries.  I have left behind much of my all or nothing attitude in favor of healthy group dynamics and honest transparent communication.  I also have learned that being vulnerable is not a curse.  True one can be hurt but the end results are worth every effort I am willing to put into a project or friendship.  Through my new found abilities of transparency and vulnerability I have found I could now be more empathetic and open to constructive criticism.  The world is no longer out to drown me in chaotic emotions of negativity, rather I have found the opposite to be true.  Through storms I have learned to trust, maintain an open outlook and see through to the other side.   When someone has something critical to say or offer I realize now that it probably has little to do with me and more to do with their own personal hang-ups.  When someone comes into a meeting with me ready to do battle I realize that they are probably more upset about the traffic jam they recently had to endure or the argument they got into with their significant other that morning or even something as simple as they don’t like the color of red I am wearing.  Just knowing this allows for me to react better and to be more compassionate in my dealings with co-workers and friends.  Emotional Assessments allow me to be sensitive and intelligent in the workplace and in my personal life.

                I have already professed to being a journal writer and well rounded reader both of which equip me in the healthy processing of emotions.  I think it is also important to recognize the importance of my faith when looking at my new found maturity in handling emotions.  My faith allows me to not have to be in control at all times and to learn to trust not only God but his ability to work through others for the betterment of all.  Faith also helps me to just let go sometimes. To not have all the answers and to be OK with the idea that life is full of paradoxes and the unknown.  Emotional Intelligence requires us to not only be open to the concepts and multi-faceted ranges of emotions but to assess them in ourselves and others alongside of learning to manage our emotions.  Seeking outside counseling can be one way of doing this and one avenue I have chosen to pursue.  This has greatly helped me to process my past, present and future in a more healthy way.  It has also allowed me to share and teach others what works in my life.  So now instead of telling people to stop whining and sniveling, I share and teach them core principles and concepts which have proven to be successful not only in my life but many others.  I believe this to be the best example of emotional intelligence in my life.  My willingness to recognize the importance of emotions coupled with a new found eagerness to share this knowledge with others. Thanks God for continually working with me to make me better a disciple.

Postulo of a Vita- The Measure of a Life

As of late I have found myself questioning how one goes about measuring a life.  Do you measure it in feet, good deeds, worldly success, ones faith or the legacy one leaves behind?  Except for the feet part, I have come to the rationale that it is most probably a combination of all the above and then some.  There are some who might even contest the very idea of quantifying life but I believe most, like myself, would like to consider that there is some value to be placed upon our time here on earth.  So then the question remains, exactly how does one go about measuring a life?  Society has been asking this question since before Socrates and will probably go on asking this question until the very end of time itself.  However for reasons of my own sanity I am going to attempt to measure my own life as a leader and as conscientious citizen.  Socrates would consider this a noble effort indeed as he himself claimed that “the unexamined life is not worth living.” After a brief bit of personal and work history I will attempt to use the frames of Optimism and Hardiness with which to examine my leadership and legacy.  Therefore, let the measuring of a life begin.

I have chosen to delete my previous writings and will come back to this topic again soon with some new thoughts :) thx 4 your patience 

heu sacer pectoris - Oh Sacred Heart

Well I have been hospitalized @ Sacred Heart since the 22nd of November with a brief 24 hrs of that time at home before I had to return.  Since I have been suffering from some crazy hypoglycemic episodes they felt it best to keep me for observations and tests.  Those tests of course have been feeling a little medieval since for the first 24 hrs I was getting my finger pricked for blood glucose readings and then blood drawn every two, now it's just blood draws every two hours for an indefinite time.  My pastor and his family came for a visit and it was almost comical how fast he and his sons made a beeline for the door when the needles came out, but it was nice to pray with him and his family and all the other disciples from church who are making it up here to visit me.  My boys and I skype  and they make it up as often as possible. My gal pal Angela helped me pay bills 2day and Christie and Chris are making sure the boys don't starve and have some place to go when they get bored.  Tina and Chris had the entire staff in stitches of laughter when they brought me up the hill, last week and the nurses wanted to know if they would be interested in sticking around just to keep everybody's mood light.  So I have taken to call all the blood drawers Vampires and they love it.  I have had the nicest nurses and hospital staff anyone could ask for, the doctors aren't too bad either, I just get a little frustrated when the simulated tests don't go as planned.  Being on no food or drink for almost 72 hrs now probably isn't helping my mood.  They promised tomorrow if I don't hit the magic numbers they are looking for then I can go back to a normal diet, in retrospect I am not sure that's a good thing or not as hospital food is not exactly known for it's palidity (not sure that's a word but it sounded good, lol).  Well I shall sign off for now as I am getting pretty sleepy and nauseated staring at this screen.  I hope and pray this blog finds you all in a good place and that you all had the most wonderful Thanksgiving. Let's chat again soon...